Shanghai’d in Recovery

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I am honored to share a story from one of our mother bears that highlights many of the challenges and opportunities families face as they work through a severe emotional challenge. In this story, a family learns about the power of language, hope and letting go with love so that every family member can grab on to a life worth living.

Mother Bear CAN Family Recovery Story

Four years ago my husband accepted a job managing an American manufacturing facility in Shanghai. For one fun, adventurous year, I lived with my husband. For the past three years, my husband and I have lived separately because our youngest adult child has needed a family touchstone in the States.

I am writing this entry while sitting in my husband’s flat in Shanghai. This is my first vacation away from my son in nearly three years. My husband and I have been able to visit Singapore and the ancient and awe-inspiring temples of Cambodia. I was a little nervous about taking this trip, but all is perfectly calm on the home front.

 

I feel so blessed to share our family’s healing and recovery. Understand we’re still very much in recovery, but healing is coming as swiftly as the onset of our son’s distress.

For four long years, I was too exhausted, fearful, grief stricken and downright confused to imagine a life outside my son’s emotional trauma and all the complications that ensued…but here I am!

Even after all our experiences, my husband and I are more conflicted than ever as to the causes of emotional distress and trauma. But we are not conflicted about antipsychotics, mostly because our son has opted to not take them for good reason.

We are not zealots for or against medications. If there are many ways to, and degrees of, emotional distress and trauma, wouldn’t it stand to reason there can be many ways to recovery?

We are also not conflicted about substance abuse. Drugs almost destroyed us. We don’t believe drugs are the root of our son’s distress, but pot definitely contributed to his mania, psychosis and mood swings. Our son’s biggest strides in recovery have come with his decision to no longer self-medicate.

In the beginning of his abstinence, our son was still struggling with voices and “implied thoughts” but, after 14 weeks, he tells us even those symptoms have lessened considerably. He has yet to gain back his energy levels and ability to focus; he also suffers with a badly wounded self-perception. However, we’re confident, with time and therapy, these residual negatives can be repaired.

Our recovery began in January of this year.

Out of utter exhaustion, and as a last resort to save my hollow, aimless and ever-growing resentful self, I transferred the management of my son’s trauma and life back to him. At the time he was quite inside his head, still smoking pot, and had just decided he would not continue Zyprexa after a 30 lb weight gain.

My letting go and empowering my son wasn’t particularly moving. I was too tired, and he was too delusional, but I’ll never forget this day because it was the day before my 54th birthday.

I explained to my son his life—emotional distress and all—was his and only his to manage. I admitted that up until that moment, I had given him way too little credit, and my fear had delayed both of our life journeys.

I acknowledged that, at 24 years of age, my son was certainly a man. Despite this fact, I had tried in vain to fight his battles for him. I realized I was denying him his life story, his battles to conquer—his manhood. I was also denying myself my life quests by taking on his (which was the root of my resentment and exhaustion).

I apologized. I told my son I loved him and trusted him and had no doubt he would find a way to make the most of his life if he so chose.

I also promised my son that moving forward that our language and expectations would change. No more DSM-IV talk. I promised we would no longer consider his trauma an illness for life. I also acknowledged that my son’s experience of emotional distress and trauma had affected our entire family. I told my son that each of us had healing and recovery work to do, regardless of whether he chose to move forward. I reminded him that everyone in our family had our undeniable stories that were to be respected.

Very little else was said that day, but we’ve talked plenty since.

Our son actually got worse before he got better, but we stuck it out. More importantly, our son stuck it out and literally began fighting for his life.

Letting go was counterintuitive to every fiber of my being. Entrusting our delusional son with his precious life was the quintessential opposite of everything else we had already tried. But for four years, what we tried wasn’t working!

Here are some of the changes we have made:

  • We have embraced our son’s emotional trauma and no longer fear or try to control it.
  • We have redefined the language, possibilities, and expectations around our son’s trauma.
  • We have empowered our son to take control of his whole life, and we respect his decisions in how he manages it.
  • We have acknowledged our entire family’s stress and trauma, and we have empowered and expected all members to work on their healing and recovery.
  • We have taken a long hard look at our emotional health and life choices and how we may have unwittingly contributed to our son’s stress.
  • We also have stepped up to taking care of ourselves emotionally, physically and spiritually.

Right or wrong we have come to the conclusion that our son’s emotional distress, coupled with mind-altering substances (including ill-prescribed medications by professionals), resulted in the serious symptoms that led to four hospitalizations.

While we once feared the symptoms were forever (because this is what were taught and told countless times), already our son has proven this theory wrong. Thousands of people are proving this theory wrong.

HOPE is a game changer. New perspectives and new language have empowered us all.

While our family’s truths and recovery methods will not necessarily work for every family, I believe the key has been fully expecting healing and then committing to recovery as a family. And also understanding the incredible power of language.

I wish someone had told me recovery was possible four years ago when we were in the throes of our trauma. I wish I had known emotional trauma is not hopeless and not a life-long living hell. But I’m grateful now to be able to say that our family has literally been blessed by our life experiences. And I’m grateful for the opportunity to share that blessing with other families.

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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43 COMMENTS

    • Hi Anonymous (the former), I wanted to respond to your comment about anonymity and credibility. You raise a good point

      Donna has generously shared her story with us and, as you can see, is happy to share her name, for which we are grateful.

      When sharing family stories, we respect each family’s decision about whether or not they wish to be identified. We think recovery stories are valuable even when the author chooses to remain anonymous.

      There are many reasons why the author of a family recovery story might prefer to remain anonymous or use a pseudonym in a public space such as this blog.

      Some authors are eager to share their recovery journey but recognize that other family members may not wish to be identified in the process. The author may be concerned about exposing other family members to stigma (even if they wish to be public themselves). For others, writing about their family’s recovery may be the first step in finding the courage to become more open.

      Encouraging other families in finding recovery and helping all families feel safe and empowered, ultimately, is our top priority.

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  1. “Drugs almost destroyed us. We don’t believe drugs are the root of our son’s distress, but pot definitely contributed to his mania, psychosis and mood swings. Our son’s biggest strides in recovery have come with his decision to no longer self-medicate.”

    Pot doesn’t ’cause’ anything except getting stoned. Everything else is wild speculation and you know it.

    What long term pot use does contribute to, just like long term escapism of any kind, is a lack of maturity. If you’re getting high all the time how are you supposed to grow as a person?

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    • “Pot doesn’t ’cause’ anything except getting stoned. Everything else is wild speculation and you know it.”

      Hi anonymous, speculating what the author “knows” is, well, speculation, isn’t it? We all have our our own unique understanding about what leads to recovery (and what leads away from it).

      Beyond our right to define our own recovery journeys, there is evidence that links marijuana use and psychoses. Whether you find this evidence credible is another matter. Below is a link to an article on this topic, “Why Marijuana Can Trigger Psychosis,” which appeared in the news section of Mad in America on January 8, 2012.

      http://www.madinamerica.com/?s=marijuana%2C+psychosis&submit=Search

      What is interesting about this study is that it indicates that the two main active ingredients may have opposite effects, which could explain why opinions vary so widely on this topic.

      Be well!

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      • I find that research not to be credible in the slightest. 15 ‘healthy’ young men. Tiny study telling us nothing the 1960s doesn’t tell us about drugs when it comes to set and setting. http://en.wikipedia.org/wiki/Set_and_setting

        “Hi anonymous, speculating what the author “knows” is, well, speculation, isn’t it?”

        No it isn’t. It is obvious that someone who provides no direct evidence their son’s problems were caused by the chemicals in pot causing something, is speculating. I don’t need to know her, talk to her, ask her what she ‘knows’ because I know no living, dead, or unborn human on the entire planet can prove pot ’causes’ what they say it ’causes’. It’s wild speculation.

        That said, I recommend against escaping reality with drugs every day, using any kind of drug. It is blindingly obvious that such a lifestyle isn’t going to end well for you or your loved ones.

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      • Pot does, indeed, have the potential to cause psychosis as well as depression, the depression normally being on the “come down” side of the drug. I have experienced highly increased psychotic symptoms when I tried to use pot as a pain killer alternative to the traditional prescribed pain killers. My hallucinations were very vivid, very real, and so intense that I feared I would never escape them. Luckily I did get back to the place I was before I smoked pot but it took a few weeks to do so.

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    • Marijuana has caused me to have both extreme paranoia and psychosis. It can happen. It does seem to be very helpful for two people I know who use it consistently for anger issues. As you note, they do seem to be strangely immature. It is obviously much less harmful than a lot of legal psychiatric drugs…

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      • Stacy – I’m always hesitant to speak on behalf of my son, but he has determined marijuana affects him in the same manner as you report. Thank you for sharing your observations. I’ll not debate our “speculations” or our son’s “hearsay”. Without question we witnessed unmitigated healing from dire symptoms of paranoia and psychosis once marijuana was no longer a factor.

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        • I, too, despite blogging about my son, am hesitant to speak on his behalf. I report everything from my own perspective. My son didn’t indulge in marijuana or other recreational drugs – I feel fairly confident about that – but had he done so, it would have confused an already confusing issue. That being said, recreational drugs seemed to be what the doctors were looking for. I resented that. They seemingly couldn’t understand that a sensitive, intelligent young man would have psyho/spiritual issues. Jung understood it. How far removed we are today from Jung. Thankfully, there are many bloggers who “get” the psycho/spiritual angst.

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      • I am going to shamelessly steal your list of “to dos” for helping your son empower himself to recover. I am going through it with my daughter and see I’ve only been holding her back from her recovery by enabling her. It is time for me to set her free, to become her own boss (she is 21) and for me to hold myself back from trying to protect her and keep her from harm and by doing so interfering with the rest of her life. This post is so meaningful to me at this time in my life, I cannot express the gratitude I feel in words. I was sent here by God, I know this because this post is exactly what will help me in this dilemma right now. Thank you so much for sharing your experiences with us. I pray all is going along the path that you and your son are meant to travel. Take good care, God bless you and your son.

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    • Ha! Stacy – you’re kind, but for the record, I came by these new truths kickin’ and screamin’ and doing and believing ALL the wrong things. My son is to be commended for his tenacity, patience, and incredible intelligence. I’m the lucky one!

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  2. Donna,
    Thank you for your clear eyed take on how to help someone recover. It mirrors my own experience. You were fortunate in that your husband and you were not conflicted about the antipsychotics. My husband and I did not agree about their value, he initially being in favor of their use, me against, and the disagreement was a huge impediment to our ability to move forward. I felt that the drugs were a huge and unwanted intrusion on our home life, which was already stressful enough under the circumstances. Self-examination and apology are critical, and so is learning to let go and trust a grown child to work it out in his or her own way. I took up yoga and meditation, which were very helpful in freeing me from the burdens of myself and needless worry about others.
    Best regards,
    Rossa

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    • Thank you Rossa – it is very affirming to read other like-minded experiences. My husband’s expat status has been a mixed blessing. By virtue of his location, he has deferred and backed me in all critical decisions. And as you point out, “being on the same page” is critical in moving forward. I am pursuing my own passions and love your explanation of “..freeing me from the burdens of myself and needless worry about others.” Blessings ~ donna

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  3. Donna,
    Thanks for sharing your personal experiences here. I’m glad things have gotten better.

    Thanks also for pointing out the variability of the effects of pot. I have know many people told me their use for many years had no effects other than “getting high”.

    I have also met individuals who told me a little bit of pot caused serious problems for them.

    Best,
    Alice

    There’s a lot of variability and all is not known in the world.

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  4. Part 2

    Happiness, euphoria,relaxation,extroversion, increase in social activities were something that happened to me rather instantly within weeks. I changed very quickly in mood and behaviour. I explored, I took every free or cheap course I could find. But I was alone in the ghetto, very poor, I could pay for very little.

    It took eight hard years to get out of there after I was cured and out of the mental health community completely. A person coming out of sickness has a much better chance for a good life if they have a caring family and the family can actually afford to pay for things like Karate lessons or Art classes etc.

    A SZ has had an unused body and unused mental function all their lives to a great extent. I naturally gravitated to vigourous exercise as I came out of atrophy. I began to do little thing like run a few blocks even in my street shoes and then wonder..Gee, what can I really do?
    My ordinary MD suggested that I had cured myself with vigourous exercise but no, I just maintained and extended my mental and physical health with that afterwards. Doing Kiai in Karate or other Martial Arts are great ways to call up and focus energy . flush and revitalize the body with anger or transformative emotion.

    If someone is on the cusp probably certain things, stresses are needed a to be done rather than avoided to catalyze the person, but it all depends what is tis happening inside.
    I set up myself to take a self -initiated risk in a group situation that was my kick start. But as I remember it, I prepared the way for a long time in advance by accommodating to the situation and sharing in private with a junior therapist from that group about what I wanted to do and what was troubling me in life, and had even written a poem for her a month earlier. So she was my substitute supportive family and the group was a confrontative reality and anvil where I could reshape myself.
    So it wasn’t that sudden.
    I guess I can say poetry cured me.
    ..
    Good luck Donna with you and your son.

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  5. (Sorry the first half will not print which means a robo censorr is censoring some poor innnocent word I now have to post in pieces until I find the poor oppressed word. 🙂
    Part 1A
    I don’t like the word ‘recovery because it can have two opposite meanings.’Recovery’ as used by disease-model psychiatrists means to refuse to examine the emotional functioning and personality of SZ before and after the so-called ‘recovery’ They prefer to ignore the person and only consider some ‘positive ‘ (as per definition) symptoms to be the SZ. Observing a difference in personality would blow away the brain disease theory. When brain disease people use the word ‘recovery’ they have no idea why it happens because they have no understanding of the inner world or SZ and they even deny there is such an inner world.

    Another word is ‘remission’ which means the person’s personality is exactly the same as before as after. That does not fit any story I have ever heard though it might be true.
    —-

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    • Skyblue, we share your concerns about language. Recovery is a helpful concept for some, not for others. We like to emphasize wellness and that recovery, as we understand it, is a universal process that all living beings go through in response to life’s changes, losses, and challenges – all of which present opportunities for growth and change.

      All labels fall short (and many are quite damaging and isolating).

      Thank you for pointing out the challenges we face in talking about healing!

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  6. Part 1B
    A ’bout of SZ’ is not nothing. Something has happened. The something, the breakdown is part of the change agent. The personality has shattered under stress from lifelong conflicts which often come to a head in teenage-hood or early adulthood, OK I can’t speak for everyone, I’m talking about my experience which seems to be the mainstream standard – maybe I can call it classical SZ. But as I have interviewed many fellow SZ I think I am describing something quite common, the original personality could not survive, with some goes down quicker than others.

    Now ‘recover’ for most people is not vacant ‘remission’, the personality usually reformats in a better functioning method.
    at least I did – if i had ‘recovered’ to my former personality then I would have been no better off. When I was cured/recovered to me it had nothing to do with the just getting rid of those classical ‘Rock Star ‘ symptoms that everyone else pays too much attention to. I suddenly understood everything, my whole emotional life and what had gone wrong. Going back to pre-symptom me which is going back to anxiety fear, confusion, incompetence , avoidal, nervousness, shyness, a matchstick personality not SZ per se but ..no thanks!!!!

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  7. Part 1C
    So it’s the brain disease folks that just think you get rid of the ‘positive symptoms’ and the ‘disease’ is gone.

    ‘Sorry folks your child isn’t really here anymore but the disease is gone.’

    So anxious parents get caught up in the same thing, but i don’t think it is good just to lose the symptoms. I always wonder if the family prevents what is necessary for the personality to change or won’t tolerate a different kind of person. But in this case the family seems to address that issue in a positive proactive manner.

    It’s not ‘recovery as the brain-disease people like to say if the person’s personality has altered , strengthened or transformed in any way. In their obsession with symptoms and biochemistry they fail to look at the actual consciousness or nature of the person.

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  8. OK! Wow! it was using quotation marks! Sorry my post is all fragmented and posted in sections – it was meant to be read in order.

    In closing let me say as a person who genuinely changed I would find it insulting and demeaning a person congratulates me for getting ‘better’ or that things have gotten ‘better’ for me. Better than what? Better than you? Better at ping pong? A ‘better’ schizophrenic? You think he’s only ‘better’ but you deny that his original condition has changed? A person is changed or not, It’s a yes or a no. Donna is saying he’s changed, not that he is a better schizophrenic.

    My old mentor didn’t like thus word ‘better’ either, so carelessly used in other contexts. It’s not clear communication – the meaning needs to be spelled out so that it is actually affirmed that what has been said has been accepted and not denied or discounted.

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  9. Addendum:

    When I was in full head on psychosis, I was not hearing voices, indeed I think I was cured of that because I never heard voices again. But the cure was awareness within madness and shock to experience the madness and all that led to my attempted suicide and compliant medication (which was overdone and lasted too long) . Anyway – just to say that during the madness I experienced many transcending states with even momentary joy, things people meditate twenty years to achieve and even I understood things from that spiritual world.

    Except I was in uncontrollable madness – didn’t understand what was happening , was afraid I would be ‘always like that’ (thus the attempted suicide) and could be in heaven one second but more often in hell.
    Predominately as I said to a friend at the time while stretching my legs in a yoga pose ‘my body doesn’t work’ – nothing of my sensations felt solid or familiar.

    But you see. the world of psychosis though frightening much of the time is not a dead world – it’s a live world and a new world – things that were never experienced become unplugged – that is quite possibly why there has to be some kind of a psychosis to restructure a failed personality – at least for some people. I must always add the codicil.
    ..
    Being medicated – that was a dead world that could never changed. so it’s very clear that the mind must be facilitated to heal itself rather than be outright suppressed.

    ..
    Nevertheless now as a cured person. a fully functioning person. I am never really the same as a normal person and the normal things of life goals do not satisfy me as they do for others. The full repertoire of my experiences always remains in my consciousness. I have been ‘touched’. I emerged as a spiritual person with a source that I can contact within myself.

    I presume by extrapolation a similar experience for others who have made this rather unwanted journey .. with the usual codicils.So this is for those people who think ‘nothing useful goes on in there’.

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  10. I have been paying attention to Skyblue’s writings for quite some time now, and based on my experience with my son, I would say that Skyblue nails “classic schizophrenia” in young men. I wish Skyblue would write a book because it would be incredibly helpful for both parents and young men. He has an excellent blog, though, that I highly recommend: http://www.skybluesight.blogspot.com/

    When he comments that

    “A SZ has had an unused body and unused mental function all their lives to a great extent” he is so right from my experience.

    and, his definition of what it means to properly recover is entirely accurate.

    “Now ‘recover’ for most people is not vacant ‘remission’, the personality usually reformats in a better functioning method.
    at least I did – if i had ‘recovered’ to my former personality then I would have been no better off. When I was cured/recovered to me it had nothing to do with the just getting rid of those classical ‘Rock Star ‘ symptoms that everyone else pays too much attention to. I suddenly understood everything, my whole emotional life and what had gone wrong. Going back to pre-symptom me which is going back to anxiety fear, confusion, incompetence , avoidal, nervousness, shyness, a matchstick personality not SZ per se but ..no thanks!!!!

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    • Thank you Skyblue! Semantics are everything aren’t they? Your insights are quite helpful and I agree with you in every way. I look forward to reading your blog and will share it with my son as well. Bottom line we are the sum of our experiences, aren’t we? “Recovery” truly is inadequate terminology.

      Off subject a bit. I’d like to propose should my son write of his experiences and of his family thus far, I think folks would be hard-pressed to recognize the two stories as the same family. Our experiences and perspectives are vastly different, yet they are our truths as much as we allow ourselves to understand truth. Blessings.

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      • Donna, that sounds like a wonderful idea if your son is interested in sharing. As you wisely mention in your story, there can be more than one “true” and meaningful way to experience a situation. And each reality can be honored without sacrificing our own understanding, which, at least for me, is always evolving anyway.

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  11. Hi Donna

    It’s great to hear your story – I am so glad that you and your family have found a way to help your son and yourselves. Life is not easy at times – but as someone who has been diagnosed with schizophrenia and is now better, I can assure you that I now see my past experiences in a positive light.

    It has taken a great many years for me to feel completely better – almost twenty-five since my first episode of psychosis – but, like Skyblue, I am now a new person compared to the old, shy and anxious teenager who had a breakdown.

    I am sure that if I had access to all the information that is now available when I was younger, I would have recovered much more quickly. Hope is vital, as you say, and there is certainly plenty of cause for hope these days, and much evidence of recovery from serious mental illness.

    All the best, Louise

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  12. Oh, and I do respect Skyblue’s points about the use of the terms ‘better’ and ‘recovery’. I am just hesitant to use the term ‘cured’ – partly because I do not think I am immune from further breakdown (although I think such a thing is unlikely to happen) but also because the term ‘cure’ implies that someone else has played a part in my recovery.

    To be fair, I did have some very helpful CBT which reduced my anxiety greatly (and I see now that anxiety was at the root of all my mental health problems) but my main therapy has been writing a memoir about my experiences – when I read back through my book I could see exactly what had caused my problems – it was like a light coming on!

    Whatever I am – cured, recovered, or simply better, I am happy!

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  13. Thanks for this wonderful post and story! It is most inspiring and helpful.

    Changing the way I talk about schizophrenia is a big task. However, it is one that I am most eager to accomplish!

    I have talked about it from the Western medical model’s perspective for so long. In my mind, I know what I think and feel, but developing the language to both understand better and communicate this with others is not easy, at least not for me.

    I appreciate this website, the writers and bloggers, as well as the people who comment and of course, the people who are sharing their stories. Thanks Donna!

    I would like to share my story one day, but right now, I feel too angry. I’m angry that I believed what I did. I’m angry that my son has been mistreated, devalued, and had his rights taken away so many times for things like saying he was depressed or for not putting away his clothes in his own home. I’m also very sad about it.

    Sometimes, I feel like I need to scream my story as loudly as I can.

    When psychiatrists diagnosed my son, I had no clue what schizophrenia is or isn’t. I had accepted depression as a common problem in my family, and for me personally, but I never really believed it was a ‘mental illness’. Inside, I always believed it was as a response to trauma, but the symptoms of schizophrenia seemed so different than depression. I believed the psychiatrists when they said schizophrenia is a life-time brain disease.

    I appreciate the things you shared Donna, especially because they are things anyone can do. I may not be able to afford to send my son to a residential healing community, which I would love to be able to do, but I can change my perceptions, attitudes and decide to work on my own issues, as well as doing things that are good for me.

    I can relate to not having a break. I have a little one right now, but am not sure how long it will last. Yesterday I had lunch with two friends, and it was like Christmas to me! Just a normal way to spend some time I thought to myself.

    Thanks again for sharing your story!
    Michelle (dogkisses)

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  14. Donna,
    I am so interested in your story because I think it can help my family very much. Can you share more info on how you stayed the course when things got worse before they got better? What was that like? What kinds of decisions did you have to make? Thank you so much for sharing!

    Mary

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